sensory issueshttps://www.autismspeaks.org/taxonomy/term/17426/0
enThe Ballad of SenseAbility Gymhttps://www.autismspeaks.org/blog/2012/09/26/ballad-senseability-gym
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<p>This is perhaps the most important thing I’ve done since marrying my husband and starting my incredible family.</p>
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<p><em>Alysia lives in Hopedale, MA with her husband and three sons. She is active in the special needs community through her volunteer work, specifically as the managing editor of the <a href="http://www.spdbloggernetwork.com/">SPD Blogger Network</a>, a website designed to connect parents of children with sensory processing disorder and through her own personal blog <a href="http://trydefyinggravity.wordpress.com/">Try Defying Gravity</a>. She is also a member of her local special education parents advisory council. Her middle child was diagnosed with PDD-NOS at age 3 1/2. Her youngest was diagnosed with PDD-NOS a few months before his third birthday.</em></p>
<p>This is perhaps the most important thing I&rsquo;ve done since marrying my husband and starting my incredible family.</p>
<p>My very dear friend and I are opening a parent-led sensory gym.&nbsp; As a non-profit. For kids just like mine.</p>
<p>We&rsquo;re calling it &ldquo;<a href="http://www.senseabilitygym.com/mission.html">SenseAbility Gym: A Sensory Gym for Sensational Kids</a>.&ldquo;</p>
<p>But first&hellip;the back story.</p>
<p>**********</p>
<p>This winter, my friend and I took our sons to an open sensory gym in sponsored by the <a href="http://www.autismalliance.org/">Autism Alliance of Metrowes</a>t.&nbsp; We watched our boys run around and play and smile.&nbsp; The equipment was familiar to the boys from their OT sessions.&nbsp; As a bonus, my friend and I got to actually talk to one another.&nbsp; A few weeks later, we attended another sensory open gym. Again, the boys were in heaven.&nbsp; Jumping into ball pits, climbing through the squeeze machine, swinging around on the therapeutic swings.&nbsp; And we got to talk.&nbsp; Mostly about how we wished there was something like this open near us all year round.</p>
<p>I wrote about <a href="http://trydefyinggravity.wordpress.com/2012/02/19/free-to-be-you-and-me/">our experience there in my blog</a>.&nbsp; I talked about how welcoming it was.&nbsp; No one there batted an eye if a kid was upset, or melting down, or jumping up and down, or making noises, or making eye contact or not.&nbsp; It was pure acceptance and love for our kids.</p>
<p class="rtecenter" style=""><img alt="" src="http://www.autismspeaks.org/sites/default/files/blog/ev-5.owa_.jpeg" style="width: 300px; height: 225px; " /></p>
<p>My husband read it, saw my son&rsquo;s happy face in the pictures, and casually said &ldquo;You should open a place like that.&rdquo;</p>
<p>I&rsquo;m not sure he actually meant it. But I started to cry.&nbsp; Because I knew we had to open a place like that.</p>
<p>The more we talked to people: parents of kids with special needs, parents of kids without special needs, therapists, teachers, you name it.&nbsp;&nbsp; They all said we had to do this.</p>
<p>We met with a business consultant to organize our thoughts.&nbsp; We relied on people in our community who took their personal time to sit with us and tell us what we needed to do to make this work.&nbsp; We filed with the state as a nonprofit, with the attorney general&rsquo;s office as a public charity, and received our 501(c)3 status from the IRS faster than anyone said it would happen.</p>
<p>And so SenseAbility Gym, Incorporated was born.</p>
<p class="rtecenter" style=""><img alt="" src="http://www.autismspeaks.org/sites/default/files/blog/senseability-webnologo.gif" style="width: 300px; height: 50px; " /></p>
<p>**********</p>
<p>SenseAbility Gym&rsquo;s mission is to provide a parent-led sensory gym, giving children with special needs a safe, fun, indoor area where they can play and accommodate their sensory needs.&nbsp; This will be the first of its kind in the Metrowest area of Massachusetts.&nbsp; We&rsquo;re modeling our gym after <a href="http://www.extremekidsandcrew.org/xkids_site/Space_No._1.html">an incredibly successful sensory gym in Brooklyn, NY</a>.</p>
<p>We believe in the fact that all children deserve access to the types of therapeutic equipment used in their schools and their private occupational therapy clinics and we believe that parents need to interact with their children to learn what helps their child &ldquo;feel better&rdquo; and have fun. There are four important components to our mission.</p>
<p>&middot;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Community: SenseAbility Gym wants its members to feel welcome, and part of the special needs community.</p>
<p>&middot;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Safe Sensory Play: SenseAbility Gym wants parents of children with special needs to feel there is a safe place to bring their children for fun, exercise and sensory support.</p>
<p>&middot;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Acceptance: SenseAbility Gym will have an environment that recognizes that all special needs children are different and that all learning styles, personalities, and abilities are welcome.</p>
<p>&middot;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;Support: SenseAbility Gym will be a place where families of special needs children can go to meet other families who share the same struggles.</p>
<p>I&rsquo;m lucky to be connected with special needs parents all over the country and the world.&nbsp; The one common statement that most parents say is &ldquo;I feel so alone.&nbsp; My child is the only one that has these extra special needs. I have no one to turn to for support.&rdquo;</p>
<p>We see the gym as a place not only for our kids and kids like ours to accommodate their sensory needs, but also as a place to build their social skills and interact with other children like them.&nbsp; We see the gym as a place where moms and dads can interact with parents just like them.</p>
<p>We see it as an another piece of the support team helping families know they are not alone.</p>
<p>**********</p>
<p>We know that as many as one in six children have sensory processing issues. That is from the <a href="http://www.spdfoundation.net/about-sensory-processing-disorder.html">SPD Foundation</a>.We know that 1 in 88 children &ndash; 1 in every 54 boys &ndash; are diagnosed as on the autism spectrum.</p>
<p>In our small area we have the potential of connecting with over 400 families who could use the gym.&nbsp; We&rsquo;re guessing that people will travel farther and the actual number will be even higher.</p>
<p>That is over four hundred families that could finally connect and say &ldquo;Me too.&rdquo;</p>
<p>**********</p>
<p>We need your help.&nbsp; As a non-profit public charity, we are completely reliant on donations, grants, and our membership dues to stay open.&nbsp; None of us are taking a salary.&nbsp; All the money raised goes right back into keeping the gym open and running: rent, electricity, equipment, furniture, insurance.</p>
<p>Our gym will be located in Hopedale, MA.&nbsp; There will be one large open space with equipment like therapy swings, a scooter board ramp, a ball pit, tunnels and a squeeze machine.&nbsp; We&rsquo;ll have one quiet &ldquo;sensory&rdquo; room with crash pads and calming activities.&nbsp; And one classroom space for us to hold social skills or life skills classes, or to be used as a sensory-friendly homework room for children. Families will be able to purchase memberships to access open gym times with their children.&nbsp;</p>
<p>We would like to have our grand opening in January 2013.&nbsp; We are actively pursuing local and national grants to help get us closer to that number.</p>
<p><strong>We need you to tell people about us</strong>.&nbsp; Maybe you know a family who has a child with special needs in our area who could benefit from a membership at the gym.&nbsp; Maybe it&rsquo;s your own family.&nbsp; Maybe you work for a company that is generous with community giving.&nbsp; Maybe you know children who need to raise money as a community service project and they would like to purchase a piece of equipment.</p>
<p>I need you &ndash; my friends and family &ndash; to help make this gym a reality.&nbsp; Not just for my kids or my friend&rsquo;s kids.</p>
<p>But for mom who told me at our town&rsquo;s Day In The Park that her daughter needs a place like this.</p>
<p>For the parents sitting in an Early Intervention family group right now wondering where they could find a safe place to meet once their kids turn three.</p>
<p>For the dad who is desperately looking for a way to connect with his autistic son, but can&rsquo;t afford the play equipment his child needs.</p>
<p>Every dollar donated goes to the gym and those families.</p>
<p class="rtecenter" style=""><img alt="" src="http://www.autismspeaks.org/sites/default/files/blog/ev-6.owa_.jpeg" style="width: 149px; height: 224px; " /></p>
<p>**********</p>
<p>&nbsp;</p>
<p>I cannot wait to see the smiling faces on the kids that come through.</p>
<p class="rtecenter" style=""><img alt="" src="http://www.autismspeaks.org/sites/default/files/blog/ev-7.owa_.jpeg" style="width: 300px; height: 200px; " /></p>
<p>And their parents.</p>
<p>On behalf of my friend and every family that this will help, thank you for reading.</p>
autismAutism SpeaksAwarenessFitnessSenseAbility Gymsensory issuesTry Defying GravityWed, 26 Sep 2012 18:26:40 +0000alison.dyer206981 at https://www.autismspeaks.orgNew Findings on Sensory Overload: A First-Person Perspectivehttps://www.autismspeaks.org/blog/2012/02/02/new-findings-sensory-overload-first-person-perspective
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<p><em>Guest blog post from&nbsp;Autism Speaks Science Board Member&nbsp;</em><a href="http://www.johnrobison.com/" target="_blank"><em>John Elder Robison</em></a><em>, author of</em>&nbsp;<a href="http://www.amazon.com/Look-Me-Eye-Life-Aspergers/dp/0307396185/ref=ed_oe_p/105-9101902-8855645" target="_blank">Look Me in the Eye: My Life with Asperger&rsquo;s&nbsp;</a><em>and</em>&nbsp;<a href="http://www.amazon.com/Different-Adventures-Free-Range-Aspergian-Aspergians/dp/0307884813/ref=ntt_at_ep_dpi_2" target="_blank">Be Different: Adventures of a Free-Range Aspergian</a></p>
<p>According to a press release I received this morning, new research from Cold Spring Harbor Lab might help explain how a gene mutation found in some autistic individuals leads to difficulties in processing auditory cues and paying spatial attention to sound. [Editor&rsquo;s note: See our related <a href="http://www.autismspeaks.org/science/science-news/autism-risk-gene-linked-sensory-overload">science news story</a> on this Autism Speaks-funded study.]</p>
<p><em>The study found that when a gene called PTEN is deleted from auditory cortical neurons&mdash;the main workhorses of the brain&#39;s sound-processing center&mdash;the signals that these neurons receive from local as well as long-distance sources are strengthened beyond normal levels. </em></p>
<p>That&rsquo;s the first interesting part of the study. PTEN has been associated with autism in a number of previous studies. In particular, the PTEN variation has been found in autistic people with larger heads, and it&rsquo;s suspected as a cause of both additional connectivity in the brain and additional brain cell growth. How many of today&rsquo;s autism population have a PTEN variation?&nbsp; Do you?&nbsp; No one knows.&nbsp;</p>
<p>It&rsquo;s one of many genes researchers are studying. What I do know is that I have abnormal sensitivity to sound, as do many autistic people. Many of us are easily overwhelmed by noises that go unremarked by the rest of the population. For some time, I have realized my excess sensitivity is a two-edged sword. On the one hand, it gave me powerful insight into music and facilitated my earlier career in rock and roll. On the other hand, it has often put me at a disadvantage as I&rsquo;m rendered inoperative by what others see as ordinary situations. It&rsquo;s interesting to read that PTEN may be a cause of that difference.</p>
<p>Understanding the genetic foundation of why that happens doesn&rsquo;t do me much good, but the next part of the study might: Researchers found that those can be blocked by rapamycin, a drug currently in use as an immunosuppressant. Rapamycin as an autism therapy has been studied before and found beneficial in some cases. This study is one of the first that sheds light on &ldquo;why&rdquo; and speaks to a specific mechanism by which we may be disabled. Now that I&rsquo;ve come to know many people on the spectrum, I realize I am one of a fortunate few who have significant sensory sensitivity without being disabled by it. &nbsp;</p>
<p>The vast majority of autistic people who write about sensitivity do so in the context of disability. If there were a way to reduce sensory overload, I&rsquo;m sure a number of folks on the spectrum today would like to hear about it. One next step might be to see if rapamycin has the same effect in humans, and what other unforeseen effects it may have. Rapamycin has already been tried as a therapy in other contexts relating to autism.</p>
<p>A targeted study that looked at the drug&rsquo;s effect specifically on sensory overload would be very interesting. It&rsquo;s possible that this research illustrates a first step on the path to remediating a specific component of disability for many people on the spectrum. Much more testing will be needed to really know if that&rsquo;s true, but it looks like a promising start. My biggest concern is that rapamycin may have unforeseen effects elsewhere in the brain, and we won&rsquo;t be able to understand that until we have conducted a sizeable human trial. We can only do so much by observing and extrapolating from mice. An interesting aside is that Dr. Zador&rsquo;s research further supports the emerging idea that excessive brain plasticity is a key component of the brain differences that lead to autism. His research premise is that the PTEN variation causes excess connectivity, and connectivity is a key element of plasticity.</p>
<p>I&rsquo;ve written about that idea in earlier posts. I read a lot of talk in the autism community that questions why we spend money on genetic research when today&rsquo;s autistic population needs help now. There is a popular perception that genetic research can only benefit unborn generations, or even worse, be used as a tool for selective abortion. Dr. Zador&rsquo;s study shows a clear pathway from a basic genetic study to a possible therapy for autistic people today, if they suffer sensory overload issues. It&rsquo;s a perfect example of why this kind of work continues to be important and needs to be funded alongside all our other efforts in the autism research arena.</p>
<p><em>One of the pathways regulated by the PTEN protein involves shutting down an intracellular enzyme called mTORC1, which promotes cell growth, among other things&hellip;. While Zador is excited about &quot;this finding that suggests that mTORC1 could be a good therapeutic target for some cases of PTEN-mediated brain disorders,&quot; he is also keen to further pursue his team&#39;s new evidence that cortical hyperconnectivity could be the &quot;final pathway&quot; by which diverse ASD genetic pathways lead to a single ASD phenotype. &quot;Using cortical connectivity as a paradigm for assessing ASD candidate genes could provide insights into the mechanisms of the disorders and perhaps even give us clues to formulate new therapeutic strategies,&quot; he states.</em></p>
<p>Dr. Zador&rsquo;s leap from a subtle variation in genetic code to a specific behavioral aberration represents a brilliant leap of intuition and reason, backed up with careful lab work. It&rsquo;s the kind of result I hope to see when I cast my vote for further genetic studies. This work was originally funded by Autism Speaks and NIH four years ago. Here&rsquo;s another really fascinating point to ponder. The PTEN genetic variation has been already associated with certain people with severe autistic disability and people with tubular sclerosis. Now, by associating PTEN with auditory sensitivity, we confront the question:&nbsp; Do people like me have the PTEN difference too?&nbsp; No one knows, because that study has never been done. I&rsquo;ll just say one more thing in closing.</p>
<p>The discovery that PTEN aberrations can lead to sensory overload, and the pathway by which that happens stands separate from any question about rapamycin as a therapy. Don&rsquo;t let worries about a particular drug blind you to the significance of the first finding. Other researchers are looking at alternate ways to affect cortical plasticity in general and even connectivity as described in this study. &nbsp;Rapamycin may end up being a therapeutic answer for some, but it&rsquo;s equally possible that a better therapy will be developed now that we are beginning to unravel the underlying issues. One day, autistic people who are disabled by auditory overload may be able to &ldquo;mute&rdquo; the disability, while retaining enough sensitivity to be exceptional. That, folks, is what the science is all about.</p>
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https://www.autismspeaks.org/blog/2012/02/02/new-findings-sensory-overload-first-person-perspective#commentsautismAutism Speaksautism spectrum disorderCentral Auditory Processing DisorderCold Spring HarborJohn Elder RobisonPTENRapamycinSciencesensory issuesThu, 02 Feb 2012 21:59:29 +0000126811 at https://www.autismspeaks.org